Cancer, Caramels and Roller Coaster Rides

Giving myself grace is going to be one of the ways I manage this whole cancer journey/adventure/nightmare…

Week 3: Tuesday was day 18 post-hysterectomy and I looked down at some point to discover my swelling had gone down enough I could see the lower half of my belly and even the shadow of my belly button whereas before I could only see the top portion of my belly!

For some reason, I expected surgery swelling to reduce at a consistent rate, not this sudden burst of relief. I’m not the least bit mad about it though. This feels so much more comfortable 🙏🏻

I feel both so much better and am also still utterly unmoored by this new journey as a uterine cancer patient. So grateful my new doctor yeeted my uterus right on out otherwise things might not have been found until a much more progressed stage! I’ve dived headfirst back into journaling as a means of not just surviving just thriving during this scary and uncertain period.

Some days I find myself opening the elastic and putting pen to paper multiple times a day.   

I’ve gained much encouragement and empowerment from watching Jane the Crazy’s YouTube videos. It feels like I’m unlocking so much creative energy that’s been systematically hidden as a result of negative comments (one bing my 3rd grade art teacher who mocked me when I couldn’t trace), narcissistic abuse (being verbally and emotionally beaten down to where I felt I couldn’t justify and/or safely explore creativity in physical forms because it was a “waste of money” or I went through materials too fast or because my version of creativity didn’t look like everyone else’s) and just too many years without being connected enough to myself to acknowledge how much I needed a physical creative outlet.

So, no matter what happens in this cancer journey, I’m so grateful for reconnecting with this part of myself. 🙏🏻 

It’s bringing me such comfort and joy to be in my journals.

On Wednesday, September 4th I saw a local gynecological oncologist. She ordered a CT scan with contrast for my full abdomen to see if their are indications it has metastasized. She was… ok I guess. I just didn’t feel a connection of care or softness. My partner had a different take on her so I’m really hoping my anxiety was so high I was misreading things, but with my history of narcissistic abuse and medical harm, I’m not inclined to doubt my instincts here. 

For now, while we wait for the CT Scan results, my cancer has been staged at 1B. The “B” is because my tumor was 7.5cm – anything over 5cm is considered large, a “B”.

When I asked about checking the nearest lymph nodes I learned that uterine leiomyosarcoma actually spreads through the blood and is most likely to show up next in the lungs or liver.

I didn’t like this answer.

I don’t want this to be so scary and complicated.

But, it is what it is.

And what it is is a lot to take in. After the appointment and for many days after I simply could not bring myself to write out the information I’ve just written out. 

It’s not that I was in denial, this is terrifyingly real.

I just needed space from typing it out, reading it here on the screen.

So I gave myself grace and decided to write week’s 3 & 4 together as I am now. 

Giving myself grace is going to be one of the ways I manage this whole cancer journey/adventure/nightmare…

Week 4: It was a weird weekend, I alternated between feeling utterly exhausted and numb and feeling energized by my journaling. Totally a roller coaster ride, sometimes whipping me around so fast I lost my balance in time & space.

I got my CT Scan first thing Monday morning.

The scan tech was so incredibly gentle and kind – everything you could hope for in a medical professional. When she walked me out she gave me a right proper hug goodbye.

As I walked to my car I wondered if she’s always this kind and gentle and encouraging, or if she knows my dx and she saw something on the scan and knows that Leiomyosarcoma stage 2 has a 5yr survival rate somewhere around all of 20%?

Either way I was grateful for the blessing of her care.

Tuesday I called a research cancer center in the big city south of us that my pcp had sent a referral to last week. I spoke with another very kind and gentle woman on the phone who found me an appointment for this Friday because, “with your type of cancer we need to see you quickly”…

yeah, that scared the shit out of me for sure.

Then a bit later I got a call from my pcp’s referral coordinator saying she’d just gotten a call from the cancer center saying they don’t accept my insurance. She’d called the big deal cancer center in the big city to the north of us only to learn the same. “Is there anywhere else I can refer to?” She asked with so much concern in her voice I choked up because I don’t want to have this scary fast moving cancer that is freaking all these folks out because them freaking out is freaking me the fuck out even more.

Then, just a few minutes after that call, the lovely kind woman from the cancer center to the south of us called me, “I asked billing to check again. We do work with your insurance and I’ve still got your noon appointment held.”

Phew!

Another roller coaster ride.

~ Grateful it worked out.

~ Grateful I’m going to be seen by a doctor who is active in researching cancer and publishing in journals – hoping she has a demeanor that creates a sense of safety inside my body – I’m gladly, gratefully make that journey for care that makes me feel safe.

~ Grateful I have my partner joining me, driving me, holding my hand.

…also, have I mentioned yet how much I do NOT enjoy roller coaster rides?

I have NEVER enjoyed them, only having gone on a kiddie one because my daughter asked me to and that was just-barely tolerable.

I prefer my feet firmly on the ground without jolting movements and sudden changes I have zero control in.

That’s my weeks 3 & 4.

I’m spent.

I imagine this next week will have a lot of roller coaster moments too, really hoping one of those moments is being told there is zero evidence the cancer has spread.

Love,

Kat